Godspell – still

I have so many things to say about this, but for now, this will have to do ..

{image is a photo of Brooke studying her program for Godspell, which, thanks to a heads up from a reader for which I am ridiculously grateful, we are about to see. Like in one minute. Like NOW. I’m not sure which of us is more excited.}

For background – there are links HERE back to the beginning of the story of Brooke’s love for Godspell.

I don’t want to make last night about autism. Because it was so, so much more than that. But I feel like, in a way, it would be dishonest – or, at the very least, unfair, not to acknowledge it as part of the story. You see, autism gets a pretty bad rap. And it’s not like that comes out of nowhere. I mean, it causes some pretty serious challenges around here and even more serious challenges elsewhere. And when communication is hard, nearly everything is hard. It just is. When connecting with people with whom you desperately want to connect is confusing and overwhelming and fraught with the constant risk of misunderstanding and being misunderstood, it’s heartbreaking.

But you know what autism doesn’t seem to get? Credit. Yes, credit. When things go right, we say it’s “despite” autism or that it was “like autism wasn’t even there.” I’m calling bullshit.

Firstly, if autism wasn’t there, my kid wasn’t there. Because, like Ari Ne’eman said, if an airline loses his luggage in flight, it’s not like he shows up at the airport without his autism. So to say that it feels like it’s not there because things are good is selling it, and her, short. Not only is it always going to be an integral part of the way that she experiences, well, everything, but sometimes, it might just even be the reason that things are really good.

In 2010, we took Brooke to see Godspell on stage for the first time. Brooke wasn’t yet able to sit through a performance with a live audience, so we convinced a local community theater to let us attend a dress rehearsal of the show before it opened to the public. In writing about it a few days later I said:

It wasn’t until yesterday morning that I saw the status that Luau had put up on his Facebook page on Sunday night. He had written, “For three hours tonight, life felt .. typical.”

I had a very different experience. While I don’t take anything at all away from his sentiment, I have to say it was nothing like mine. For me, the night was anything BUT typical. He later told me that he felt like autism wasn’t there. That for three ecstatic hours, it had receded into the background and blessedly, finally, just didn’t matter.

For me, autism was front and center that night. Autism was part of what made the whole thing what it was. There is nothing in our world that compares to Brooke’s pervasive and abiding love of Godspell. Sure, Katie loves Taylor Swift and a show would be a hoot. But does she listen to her EVERY day, google her, watch clips of her EVERY chance she gets? Does she draw pictures of her in Halloween costumes, at the dinner table, riding on a rocket ship? Does she talk about her, reference her, create games and scripts and whole worlds around her? Is she literally imbedded in every aspect of her life? No.

I can think of nothing that comes close.

If Brooke were not who she is – autism and all – that experience would never have been what it was. For her nor for us. While I’m not ready to say that I’m grateful for autism in and of itself, I am deeply thankful that within it there are moments like this. Moments of grace, moments of joy, moments when judgment is replaced by generosity and kindness and the world comes together to make something wonderful happen for a little girl who deserves nothing less.

A few things have changed since 2010. Katie is over Taylor Swift, Brooke can manage a live audience, and I might just be able to say that I am grateful for autism because I am so damned grateful for my girl … who is autistic.

Before the show last night, Brooke told me, as only she can, that she was feeling anxious. “I think there must be something wrong with me,” she said. “I just don’t understand plays, I guess. I might get Godspell and all that, but I’m still not happy. I don’t want to sit next to someone I don’t know. I don’t feel the way I’m supposed to feel.”

“Is that a script, baby?” I asked.

“Yeah,” she said.

“What is it from?” I asked.

“Charlie Brown Christmas,” she said.

I searched my files.

Charlie to Linus: I think there must be something wrong with me. I just don’t understand Christmas, I guess. I might be getting presents and sending Christmas cards and all that, but I’m still not happy. I don’t feel the way I’m supposed to feel.

I took a deep breath.

“Are you using the words in the script to tell me how you feel, Brooke?” I asked.

“Yeah,” she said. “I’m just not happy. I don’t feel the way I’m supposed to feel.”

I told her that I thought that it was pretty awesome that she’d found a way to tell me that. I told her that there’s no such thing as how she’s “supposed to feel.” Ever. That whatever she feels is okay to feel. I told her that sometimes we all feel anxious about things that we are really excited about. And then I remembered the sentence that had been quietly tucked into the script:

“I don’t want to sit next to someone I don’t know.”

“Are you worried about sitting next to someone you don’t know?” I asked.

She said that she was. I promised that we’d get to the theater early and check out our seats. That if she wasn’t comfortable, I could ask about moving us to the wings, which appeared, at least on the website, to be unoccupied. I told her that she could always lean over toward me in her seat.

When we arrived, she was vibrating with excitement. She ran through the grass at full squeal. I told her that we had some extra time and asked if she’d like to stay outside for a while. “Later,” she said, marching toward the auditorium. She was on a mission.

When we got inside, she poured over the program, memorizing the actors’ names. She studied their photos in the lobby, determined to match each of them with their roles and songs. She laughed again and again at the fact that Judas was to be played by a girl. “Just like the girl Matthew at BC!” she said.

An older couple sat down next to us, the woman in the seat next to Brooke’s. In a moment of magic, Brooke looked at her and said, “I’m excited. Are you?” She said she was. Brooke turned her palm up and toward the woman, then said, “I’m Brooke. What’s your name?”

The lady, now Mrs. Tina, was no longer someone she didn’t know. Problem solved.

Mrs. Tina offered Brooke a printed synopsis of the show. “SIN-OPS-ISS?” she said quizzically.

Mrs. Tina explained that it would tell her what the show was about so that she’d know what to expect.

I laughed. “Brooke, tell Mrs. Tina how many times you’ve seen Godspell,” I said.

“A lot of times of a million,” she said.

Brooke could barely contain her excitement as we waited for the show to begin. I won’t go through every detail as time is short, but she couldn’t wait for the actors to take the stage. As they did, her eyes grew wide and her hands, springing open with the electrical energy of the moment, began to orchestrate the action. It was all I could do to peel my eyes off of her long enough to watch the show.

She laughed. Oh, how she laughed. She clapped along with the music and “Woo hoo’ed” at the end of every song. She watched, rapt, as “Mary Carson” sang Day by Day, teaching both Jesus and us how to follow along in sign language. She eagerly signed along through the entire song. She giggled as “Mary Magdalene” said, “See ya latah, I’m headin to the front of the thee-ay-tah.” When Judas’s voice came from somewhere off stage, she turned instinctively to the back corner of the house where the actress was standing, bathed in red light. I scanned the crowd. Not another soul had turned to watch her sing. Not one. Brooke craned to get a better look, her eyes never leaving the corner. When something was too much for her, she squeezed my ears and then her own. When I whispered to ask if she was okay, she said, “I like it.”And when Jesus went off to pray in the Garden of Gethsemane, she leaned forward in her seat and said, “He’s scared.”

We walked to the car on air. Brooke asked if I liked the part where she played Mary Magdalene. She’d invented an entire scenario in which Katie, Luau and I had come to see HER perform. “Did you like it when I said, “Do you speak French, sir?” she asked. I told her that I’d loved it. I asked if someday she’d like to be in a real Godpsell show, not just, glorious as it may be, the one of her imagination. “I would,” she said, “And I will sing it just like Anna Maria,” she said.

“So you’ll sing Day by Day?” I asked.

“I will,” she said.

I’ve learned better than to doubt her.

As we got into the car, I told her that I’d had a great time. That I felt really so, so lucky to have been able to see the show with her.

“I do too,” she said. And then she added the words that she would repeat to Luau when we got home: “This was the greatest night of my whole life.”

And as we drove, I thought about how far we’ve come from the days when we could never have contemplated a live show in a full theater. From the times when she wouldn’t have come close to being able to tell me that her words were Charlie Brown’s and when, even if she could have, I would have dismissed them as meaningless because I didn’t yet know they were just the opposite. From the the years and years and years of defiantly “indulging” her passions while being encouraged not to “give in to her obsessions.”

And I began to think about autism. And the gift of Godspell. Call it an obsession if you must, but after all these years it feels far more to me like an abiding love. One that, like the one in the story that it tells, brings with it joy, gratitude, celebration and infinite promise.

Autism was there last night because my girl was there.

And it was awesome.

{image is a photo of Brooke and her Mary Magdalene doll surrounded by the cast of the Broadway Revival of Godspell, one of whom is holding her Jesus doll. October, 2011.}

Today is a hard day. Today I feel hopeless and scared for the future. As I’m getting my son ready for ABA I sit down to read this post. I feel a little less hopeless. I can’t wait until we can have a best day of our lives! Thank you for sharing your amazing daughter and beautiful family!

Tears in my eyes and joy in my heart as I read this. And last but not least, gratefulness for your sharing and Bookes willingness to allow us to celebrate her uniqueness….she is awesome as is her big sis and her parents! So much joy….so PERFECT!

Oh my god, Jess. Just. Oh my god. The Charlie Brown script. My jaw dropped. If you weren’t someone that wholeheartedly believes in the awesomeness and importance of scripts, your calling that a “script” would be doing it a disservice. That was…a musical riff that got taken apart, put back together into a remix, and laid over live tracks of Real Life. And it’s a pretty incredible mashup. Just the combination of what was actually happening, and the context and tone of that friggen’ Charlie Brown Christmas scene is too emotionally overwhelming for me to approach head-on.

I’m also thinking of the movies that I’ve been watching over and over since I was a kid, and the old radio serials on cassette tape that I still listen to over and over (now Itunes style) and how it feels when they start. Or when I watch one of the TV shows I obsessively still re-watch again and again, and the theme music starts playing. It’s like your heart expands in your chest like a bubble until the bubble is outside you and you’re floating around in the air.

I love this. I love the tears streaming down my face because I can see that maybe, just maybe, my boy will get there someday too. You give me so much hope and so much strength to be honest, to be real. To celebrate EVERY tiny little inconsequential (to everyone but me) victory and to take those really, really hard, awful days and learn from them. I’m starting to find the beauty in this, the gifts my boy has that I so do not have. I was telling our amazing LMT about you yesterday. About your words and your insight and your general awesomeness! What you do here matters, Jess. Your openness matters, to so many of us. You don’t know me, or my story, but please know that YOU were the person who walked me through the worst time of my life as I struggled to move forward after diagnosis. Your words gave me strength, and laughter, and happy tears. I am beyond grateful that you write this blog, that you share these moments with us. Thank you.

Someday I’d love to meet you( does that sound stalker-ish? I hope not) and we can have iced coffee with straws(ha!) and talk about presumed competence, which is my current favorite subject to regale all of Gray’s therapists with, thanks to you 🙂 But seriously, thank you. Hugs back!

My son has autism and we have had a really difficult day travelling home from holiday. Your blog really puts into words how I feel as a mother supporting and helping my gorgeous son deal with the world around him. Thanks you for being so articulate, so honest and so generous in your writing. And well done Brooke for articulating your feelings. And so pleased you both enjoyed Godspell. Best wishes from the UK xx

It seems that there is always an explanation behind scripting. Q does it all the time. And since he has been sick, I thank God every day that he has autism…because autism has saved his life. As long as he has everything that makes him happy ie, DVDs, computer with YouTube, and his TV shows, he forgets that we haven’t been home in over a year and that he has an iliostomy bag and scars that any other “normal” 15 year old boy would commit suicide over or be taking antiaxiety meds for. I am thankful for autism every hour of every day. Thank you Jess for your wonderful stories. They keep things real for me. Have a great weekend.

I “get it”. She is feeling the way she is “supposed to feel”, because she is “feeling” it! Also, New epiphany I just thought of: SHE FEELS IT!!!! She FEELS! She has “FEELINGS”!!!!! Take THAT, “Autism Expert”!!!!!!!

Your insight and knowledge of your girl is what lets her feel safe enough to face the new and “scary” stuff of life. Your understanding of what your baby is saying is what makes her able to have “the greatest night of her whole life”.
I love what the commenters say about you, because you have always been that special person all your life, and now you make others feel better because you voice what they feel. You make so many who are struggling with difficult circumstances and decisions about their children feel so much better because of your words.
Wow Jess, what a service you provide to all of us.
Thanks from a very grateful dad.
Love you…

The way Brooke is with Godspell, is the way I am with Harry Potter and anything Tolkien. It makes me so happy whenever I read about her and Godspell. She seems brilliant and I’m glad she loves something so fully. It’s really fun to feel her excitement through your words.